Musings on Mesothelioma

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If ever there was the perfect concert to have your ostomy bag leak during, it would be at a Flaming Lips performance. Picture lots of glitter, color, sparkle, inflatable creatures and a lead singer wearing rainbow wings while riding a lit-up unicorn. Part psychedelic rock, part theatre, part performance art, The Flaming Lips don’t put on a typical show.

Among a sea of mostly twenty-eight year olds, many of whom were dressed in colorful costumes and probably high, (no judgement, it’s the perfect concert to be high at!), stood my partner and I, both 49 years old. We fit in just fine. I was dressed in black skinny jeans, Adidas, a colorful long tunic and sparkly necklace. The problem was, instead of eating magic mushrooms or smoking a joint before the show, I had decided to pound back an entire, GIANT grapefruit. Now, keep in mind that I have an ileostomy: the lower part of my small intestine – the ileum – has been surgically brought out through an opening in my abdominal wall (the opening is called a stoma). Visually, it kind of looks like I have a strawberry sitting on my tummy. Ron, as I like to call my ileum/stoma, spews out everything I eat into a bag. Usually food exits my body in liquid form and it is fairly simple to empty the bag into the toilet throughout the day. But, certain foods like grapefruits, get digested differently and they exit my body in a much thicker fashion. So, essentially I had a hideous traffic jam of very thick grapefruit trying to exit my ileum and make it down to the safety of my bag.

Fast forward to me touching my bag – I always check it a million times when I’m out of the house – and feeling wetness! My worse nightmare had come true – a bag leak in public! Sweet Jesus! Thankfully I always carry supplies with me wherever I go, so I made a mad dash to the ladies room. The bathroom had speakers so I was able to listen to the show as I struggled with my bag explosion. In the stall next to me was a young woman wearing a unicorn headband. She was in her stall for almost as long I was in my mine. I’m not sure what she was doing, but I’m pretty sure she was having more fun than I was.

The bag clips on to a sticky thing called a “flange,” which is what encircles my ileum. After doing a bag change I always lie down and apply light pressure with my hand to the flange and bag: the warmth of my hand helps to properly affix the flange to my skin. So I decided to half sit, half lie on one of the chairs in the lounge section of the bathroom – LOL. I watched as 28 year olds wearing faux ripped jeans, applied massive amounts of eyeliner and lip gloss. They looked so fresh and shiny and beautiful and for a moment I felt like crying out of envy. I’m sure I looked like a total weirdo, half lying on a chair, holding my mid-section. But thankfully no one bothered to ask why I was splayed out so strangely – they probably just thought I was tripping hard on psychedelics. So again, it was the perfect concert to be at.

We had to leave a little early because my tunic was wet and I was exhausted from the emotional drama of the experience. But before going I was lucky enough to see their lead singer Wayne Coyne, perform David Bowie’s song “Space Oddity,” while surfing the crowd in his giant clear ball. So thank you Flaming Lips for helping me to survive my first public bag leak. #unicornsandgrapefruits

My stoma, Ron, is always busy spewing out everything that I eat and drink. It is exhausting keeping up with him – staying hydrated and nourished is practically a full-time job. Though Ron has resided with me on my tummy for a year and a half now, I am still not 100% comfortable bringing him out of the house.

Emptying Ron’s beige click-on bag in a public washroom is stressful. First of all, I don’t like to be rushed and women’s bathrooms always have lineups. It takes a few solid minutes to smoothly and cleanly empty the bag. With ileostomies the “output” tends to be very liquid, so you have to line the toilet bowl with tissue, otherwise there will be a splashfest of gnarly!! Then you have to make sure that the opening of the bag is perfectly clean before you roll and seal it back up, otherwise you risk burning your skin or ruining your clothes. (Been there, done that!). Finally, there is the always humiliating scent. Ron, like most stomas, could use a lesson or two on pretty fragrances, perhaps a little lavender or mint to go with that “output.” The smell is shockingly hideous. I have a toilet bowl spray called “Poo-Pourri” and though it does help, (if you spray twice the suggested amount), it is expensive and most people with stomas probably won’t have access to it. So going to a new restaurant or to a dinner party at someone’s house, I am now always filled with dread, as I don’t want Ron to ruin the vibe or people’s appetite.

Then there’s how to dress to conceal a stoma bag! Right before my cancer operation – when I got Ron – I had started wearing high waisted 70’s style jeans with fitted tops. It was a good look on me and it made me feel attractive. Now I have much more limited options. My go-to outfit consists of skinny low-rise jeans (the jeans hit me under the bottom of the bag), a snug stretchy camisole to kind of “flatten down” the bag and a loose, longer top. Thankfully I can pull off this look, but as someone who enjoys clothing I hate not having more options. Plus, even when concealed, the bag can fill up quickly making you look lump-sided. The other day I had lunch with my lovely cousin and by the end of eating I was tenderly holding Ron’s full bag – I was cradling it as if I was cradling a miniature alien baby! Whether I was comfortable or not I was forced to empty Ron’s bag at the restaurant or risk having it explode. No one can prepare you for the strangeness of having a stoma. It is heartbreaking, lifesaving and funny all at once.

If one more freaking person tells me that juicing will prevent my terminal cancer from returning, I will strangle them. Or, at the very least, I will de-friend them on Facebook. Believe me, I know all about juicing – I lived in Los Angeles for twelve years! And it’s not like I’m sitting around all day eating Doritos and drinking Orange Crush! I eat a balanced diet, but I also include one daily treat – like a couple of cookies or a bowl of ice cream. I inherited my sweet tooth from my paternal Grandmother who used to hide chocolate bars all over her house! If anything, I am more aware than others about the importance of diet because I have an ileostomy. With ileostomies, and mine is a “high-output” one, food (or juice!) goes right through you. So I am very aware of getting enough calories and nutrients to keep my immune system strong. I have managed to get myself back up to 115 pounds – from a low of 90 pounds! – so I clearly know what I’m doing. I understand that people just want to help and that often they don’t know what to say and I truly appreciate everyone’s concern. But please, enough with the Juicing.

I named my stoma Ron. I think of him like I think of those ugly, comfortable, European made shoes that many women start wearing in middle-age: necessary, but unfortunate.

There is no way to prepare yourself for getting a stoma. Though my surgical oncologist had explained their function and I had obsessively researched them, the moment you first see the red, bulbous stump sticking out of your belly is brutal. The stump, in my case a loop of my small bowel, moves: it goes in and out, kind of like a turtle’s head. Sometimes it sticks out far, other times it is almost flat. I saw myself like a scary creature from a 1950’s B horror movie: my stoma growing huge and spraying all the townspeople with a disgusting poisonous liquid. “Attack of The Stoma Monster!”

The Stoma Nurse, (there’s a job title for you!), visited me after my Cytoreductive surgery and told me not to worry about my stoma/ileostomy. I could still have sex – just wear the mini-bag! – I could do yoga! I could even surf! Surf?! Just the suggestion of surfing seemed mildly insulting. I had been in the hospital for weeks with many complications after my surgery for Peritoneal Mesothelioma. I’d endured “Hot Chemo” and I was down to a skeletal 90 pounds. Ya, I’m gonna go surfing, go Fuck yourself I thought to myself.

When my mother first saw my stoma I thought she was going to throw-up. “It’s really not so bad,” she said gagging. Yes, it really is so bad. There is no way to sugar coat it. Having your bowel poking its red head out of a hole in your stomach and spewing out vile smelling liquid into a bag which is stuck to your tummy really fucking sucks. I would not wish this on my worse enemy, not that I have any enemies, but if I did I would never wish this upon them. Though, it would be good punishment for terrorists, murderers and extreme nut-bar right-wingers – punish them by giving them stomas. Genius!

There is a chance that I can get “reversal surgery,” which would basically send Ron packing, but I think my chance is quite small. My surgeon is worried about possible “quality of life issues,” meaning that he’s worried about me not being able to hold my poop. Nice. The glamour never ends. At least with Ron and my little beige stick-on bags, I can go out and about with a fair amount of ease. Though it may sound like I am not grateful, I am. Of course I am. Ron is a life-saver. The long term survival rate for those with Peritoneal Mesothelioma is five years, though some lucky patients have lived much longer. So, if I am lucky enough to live a few more relatively healthy years, then I am more than happy to spend those years with Ron. I promise to take care of him. I will wash his stumpy little red head, keep the skin rash-free and eat enough to keep up with his relentless pace. Ron and I will be together till death do us part.

Below is a picture of Ron. He is actually a lovely shade of lipstick red!